Would you have your genome sequenced? - Science Saturday with the National Museum of Scotland
October 2016: “Science Saturday” event at the National Museums of Scotland showcases gene science and the impact and relevance of our research to human health and society
Following on from the very successful Big Ideas Day in September, Professor David Porteous and colleagues at the Centre for Genomic and Experimental Medicine held a second public participation event on 15th October 2016, in collaboration with the National Museums of Scotland, Edinburgh. The Science Saturday event was open to all, with a mini-symposium and debate session, in addition to a Market Place event held in the main hall area. Stands representing the Institute of Genetics and Molecular Medicine, the MRC Centre for Cognitive Ageing and Cognitive Epidemiology, Generation Scotland, the Wellcome Trust Clinical Research Facility Genetics Core, Edinburgh Genomics, the Usher Institute, the Mason Institute for medicine, life-sciences and the law, the Institute for the study of Science, Technology and Innovation and the MRC Farr, Edinburgh all set up shop to describe their take on gene science and the impact and relevance to human health and society. It was a powerful demonstration of the breadth and depth of multi-disciplinary research in this area at the University of Edinburgh. There were lots of enthusiastic volunteers on hand to answer questions, engage audiences young and old with relevant games and questionnaires, and lots of positive feedback.
A more formal event was also held in the main auditorium, when the question was put to the (largely adult) audience: ‘Should we sequence everyone’s genome at birth’? David Porteous briefly summarised the history of human genome sequencing, explained how the cost and time taken to sequence the human genome has plummeted in recent years and pointed out that genetic testing for several severe disorders is already conducted routinely in the NHS at birth, using a pin-prick blood sample from the heel of newborns. Professor Tim Aitman then described his own experience of having his genome sequenced and analysed, as well as discussing examples from his current research into identifying genetic mutations underlying life-threatening conditions. He went on to explain how this has led to the University of Edinburgh investing in the latest gene sequencing technology for research and clinical genetics practice.
Sarah Cunningham-Burley, Professor of Medical and Family Sociology at the University of Edinburgh, then balanced the argument by outlining some of reasons for caution, including too much information that could not be matched to treatment, or which could be potentially misused or misinterpreted. She then introduced a former PhD student, Dr Nicola Coates-Dutton who had taken both a social science and a personal interest in the question. She spoke passionately and convincingly about her personal search for knowledge and understanding from genetic analysis as to the cause of the rare and complex birth defects affecting two of her three children.
As for the schools event, the day started and ended with an audience vote on the question: ‘Should we sequence everyone’s genome at birth’? Whereas the school children started the day with a very strong ‘yes’, which dropped back a little following the discussion session, the mainly adult audience attending the ‘Science Saturday’ event were more sceptical to begin with, but became more positive after the discussion! It will be interesting to return to the same question in a year or twos time to see how attitudes change.
Both events were made possible thanks to funding from the Wellcome Trust sponsored Institutional Science Support Fund to the University of Edinburgh.